Arimidex side effects kicked in on day three

wondering7

Great discussion board!

My se's are not as severe as some of you but the knees and the old age thing is messing up my head. I started water exercises yesterday and that felt great since I can lift my legs in the water,They are not heavy in there but once I come out I am lead again. But it did help my recouping knee, it feels better so whenever I have a chance I am going to do wqter exercises.I am trying to focus on walking again and riding a stationary or real bike as well.

My hair is about 2 inches long now since chemo last summer, I had a DIEP in late Oct, and I think I might need to take out part of my thyroid for a cold nodule. I don't feel down just lucky to get through this, and yeah and gained some weight as well, so I am trying to find the old me inside all of this.The arrimedx is like having an alien encounter  -- something that lives inside of you and you do not know who it is!!!! Any thoughts on that?

wondering7

mmm5

I agree I can't find the old me on Arimidex. I am anxious and depressed and my body aches all of the time........will be discussing with my ONC on Thursday.

suntree

Wanted to update everyone on my original post regarding the awful side effects I had been experiencing after starting Arimidex.  They have subsided significantly.  I am still hot at night but I changed my comforter to a much lighter one.  I use the ceiling fan every night and that really helps.  I also keep my hair in a pony tail.  The joint pain has reduced from an 8 to about a 2.  The racing heart has gone back to normal and I am sleeping better as well.  No longer cold or shaking during the day.  The headaches and depression disappeared and I am feeling more like myself again.  I think my body went into shock initially, losing 75% of it's estrogen in 24 hours.  I will keep you all posted as to whether the side effects remain under control or exacerbate once again.  Anyone else feeling better on Arimidex after an initial severe reaction to the medication?  I will pray that all of you that are dealing with these side effects will find that they eventually become tolerable and better yet go away completely.  Love to all!

sheila5859

Has anyone out there refuse to take hormone  therpy and why?

Everlastpink

Hi suntree,

I am glad you posted.  I am on day 12 of Arimidex and also feeling much better.  My side effects were not as bad as yours, but they were there and just today I noticed a big improvement.  I do not notice the chills followed by being warm anymore during the day.  I am still warm at night, but not a true hot flash.  I am still waking a couple of times, but not every 2 hours. No longer have vicious night sweats.  I never had the body aches, and still do not.  I have been feeling like a time bomb reading about others SE's and waiting for them to happen to me, but they have not so far.  I consider myself very lucky.

I am still taking lots of calcium and vit. D as my onco advised (more than the normal recommeded amount, but it is what she advised.) and have stepped up my exercise routine a bit.

I am wondering if anyone has studied differences in side effects of people on Arimidex who had chemo, vs. those who did not.  I wonder if it makes a difference?  I did not have chemo, but my neighbor did, but did not have radiation.  Her SE's on Arimidex were so terrible after 3 mos. she quit. She is also a very active person, before and after BC.  She didn't take any supplements though.

Also, I wonder if the estradial level makes a difference.  I already had a pretty low score, post-menopausal, so maybe it wasn't as much of a "shock" to have my estrogen reduce, hence the lesser side effects. I think you are right about our bodies having to get used to it.

I am so glad you are feeling better.  Me too!

Triciaski

Update after 3 weeks on Arimidex: I'm feeling pretty darned good. My most troublesome symptom is still hot flashes, but they seem to be bothering me less and I'm also figuring out how to dress to manage them better (previously, I was always cold and am used to wearing undershirts and wool socks). I don't have night sweats, and I generally sleep pretty well.

I might be a little bit stiffer and creakier than before, but I'm not having any specific joint pain. I haven't noticed any depression or mood changes. I haven't gained any weight. I think I might actually be able to do this -- but I still worry about osteoporosis.  

Before BC, I wore an estrogen patch, and I went through some of these symptoms when I stopped that. Now on the Arimidex, my estrogen is going a bit lower, so I agree with the idea that if estrogen levels are already low, possibly the difference on Arimidex is not enough to cause the most severe side effects.

Thanks to everyone for sharing your experiences. It's good to hear about a few "success" stories (if we can call them that ).

Tricia

lilith

Many thanks to all the ladies having bearable SE and posting. After reading about so many problems, it is truly good to know that sometimes it is OK!

It is day10 today for me. I had chemo... so far, the SE are bearable. Still a bit more hot flashes than on Tamox (they had almost completely subsided after my ovariectomy), but I gave up wearing turtle necks and wool, and I  expect that once the temperature will rise it will be easier (it was with tamox as well, central heating is very unpleasant!).

I am 45, and I am noticing some joint pain. Difficult to say if it is my own's or Arimidex: I have lots of arthritis in the family, so it may be that.

I've been watching what I eat and trying to exercise a bit, so at this point no weight gain (I already gained enough on Tamox, thank you very much!). I've also noticed that even a little exercise helps a LOT to keep the joints mobile.

pip57

I did notice heart fluttering a couple of weeks after starting A.  It took about 3 mths before the aches and pains became significant.  My neck and shoulders are the worst. I did have oomp so my body has really been deprived of all those hormones.  However, even with these issues I am grateful to have A and will try to persevere. 

deborye

I have been on Arimidex for 20 months.  Minor muscle and joint pain.  I find that keeping active like walking 45 min a day and Advil or the stores generic type.  Works for me.  I have to work out the stiffness if I sit for long periods of time. 

I also take Vit D with Calcium twice a day, but 4 hrs before my thyroid pill as I just found out that supplement can lower or even cancel the thyroid pill.    

kimbly

I have been on Tamoxifen since May 2008.  I am scheduled for an oomph. March 25, at which point after my onc. wants to switch me to Arimdex.  I am terrified because I have heard so many have side effects.  The only thing I have with Tamox. is hot flashes and even that is not so bad.  (dreading summer though) I am going to discuss the change with my dr and see what she says.  I am willing to try but need to know she knows my fears.  This is a great discussion!

elisabeth

Hi All.  I urge everyone to read the article on Breast Cancer Action.  There is a very good one Peeps posted that is women's experience with aromatase inhibitors.  It is a large study done with women who were menopausal and premenopausal.  They raise some important points and the article might be helpful when talking to doctors.

I just got a call from my med onc's office and I have switched from Arimidex to Tamox.  I don't like the idea of taking it or anything.  It has been heaven not being anything.

E 

Anonymous

Hi all, thanks for your valuable information.  I'm on day 7 of Arimidex and not looking forward to experiencing any of the se's above.  I'm claiming victory ahead of time.  That's my story and I'm sticking to it!

Be blessed.

Triciaski

Elisabeth -- Could you possibly give more information on how to find the article/posting by peeps on the Breast Cancer Action site. I've looked all over and can't find it.

Thanks,
Tricia

elisabeth

Hi Tricia.  Here is the page http://bcaction.org/index.php?page=factsheets-policies-reports.  If you go there and look under "BCA reports" you will see the title.  There are only two reports listed and this is the first one.  I tried to copy this so that you could click on it and it would open, but it won't translate that way - I don't know why - sorry.

I hope this helps.  E 

cw89134

I'm on day 16 of Arimidex. I must say that "so far, so good". I'm somewhat surprised as my system is usually very sensitive to medications but I'm not experiencing anything significant so far. I'm still waiting for the other shoe to drop.

My surgeon prescribed it prior to surgery (lumpectomy scheduled for 3/26) as my receptor pathology report showed both ER+ (99%) and PR+ (53%). He said that he often starts patients on AI's prior to surgery.

Carol

Triciaski

CW -- Hello from a fellow Nevadan -- although I'm up north.

You are going through the very hardest time right now -- waiting for surgery. I had to wait a month, too, between the biopsy results and surgery, and it seemed like a very, very long time to be left wondering and worrying. Good luck! Be sure to let us know how it goes for you and the results of your nodes and path report (sometimes the path report comes back different on the tumor sample than on the biopsy).

Tricia

flannelette

Hello all - I'm 6 weeks into arimidex and finding that I'm becoming "wired" inside, cranky, speedy at times (like too many cups of coffee) and impatient. the same urge to kill as I had during menopause. Has anyone experienced this, and is it probably a sign of estrogen falling? All through treatment (surgery, chemo, rads) I was calm, serene, & happy. Now my DH's wondering what the h... happened! thanks!

souad

jenn1122

Hi all, I am on aromasin and have made the decision to stop it, I have severe arthritis in my knees which became exacerbated after chemo, rads, etc... I was on tamoxifen and this November I will be OUT three years.  Well, the Aromasin was given to me because Arimidex causes severe joint pain.  The feet started hurting and burning a couple weeks ago and today I said I am fed up.  I am on vitamins, I take the DIM, calcium, don't drink alcohol (before I was diagnosed I had heavy periods, hormonal imbalance, binge drank with my ex-fiance, note the EX) and I believe my lifestyle attributed to it.  Since I have been away from him and out of treatment, I have lost 12 pounds, am active, eat well and take my supplements.  But, I was walking like an old woman and was in pain all the time with my feet burning.  It was the tops of my feet, the instep.  I can't live like this and have asked the Lord to keep me well and I am trusting Him, not a pill to keep the cancer away.  Now, I may change my mind a month down the road and get back on, but for right now, today, I am not.  I am sick of taking Advil every other day, I am sick of the pain at night and not sleeping right, this is not quality of life for me.  I am only 49 years old, not 79.  I dealt with the cancer before and if by chance it comes back, I will face it head on once again, but for now I want to be pain free and be able to walk without hobbling. 

Thanks for listening,

Jenn

jenn1122

I was not sleeping right either, and I suffered depression and discouragement and I am an outgoing person.  I was more outgoing and happy while I was going thru the treatment.  Now that I am out 2 years I have become cranky and old. 

wondering7

Alien lady disquised as wondering7 checking in again!!!!!

Same as before. Heavy legs, weak knees. Has anyone heard of hyaluronic acid? Been reading about it in local paper, not FDA approved but claims to help joint pain and stiffness. Left a message for nutrionist about it. Wondering if it is okay to take with arrimedix. I know a lady 85 who is taking it and she loves it, gets it at health food store. Need to know more info before I take it or if I take it.

Alien lady disquised as wondering7 checking out

Valorina

Hi Meg42.  This is my first post and I was interested in knowing if the joint pain went away also after stopping the Arimidex course of treatment?  I started in August and my symptoms are so bad, I don't know if the cure is worse than the disease and I can't find information on how long it takes for the SE of the arimidex to go away.  Thank you.

For everyone having joint pain, my husband found this site for me at breastcancer.org/treatment/hormonal/aromatase-inhibitors/ where it indicates that those of us who suffer joint pain are least likely to get the Big C back.  So, there may be a pay-off in the end but I would like to know if our bones are destroyed in the process.  Thank you to all.

thegoodfight

Valorina,

Thanks for the info about the joint pain and possibly less chance of recurrance.  Just a small correction on the web site address, since I did not get there with the info you gave........only one small change.  It is an underscore (not a hyphen) between aromatoase and inhibitors.  The info was very helpful.

Caren

Bren-2007

Sheila,

   I quit taking Arimidex after one week.  My symptoms were the same as Suntree's.  I lost all sense of balance and depression was off the charts.  Also, constant nausea and vomiting.

   I also tried Tamoxifen.  I think three different times and 20 mg, 10 mg and 5 mg.  I had the same problems as with Arimidex.  My doc wanted me to take Aromasin and I never filled the prescription.

   I had a hysterectomy about 15 years ago and my ovaries removed about 8 years ago.  I'm 53 now, was 51 at dx and was Stage I Grade II, er/pr 100% positive.  I agonized over my decision for over a year.  Did research, crunched the numbers and have learned to live with my decision.  It wasn't an easy one to make.  I had to seriously consider my QOL versus the possibility of a recurrence.

Hope all is well with you,

Bren

suntree

Yesterday at 8PM I realized that I forgot to take my Arimidex but since it was so late (I take it in the morning), I decided to skip the dose.  That night I couldn't fall asleep.  It was like I was going through withdrawal.  I had tingling sensation in my feet and legs and my heart was racing like when I first started Arimidex.  At around 2Am I decided to take the Arimidex.  I eventually fell asleep and feel fine today.  Seems like when I start or stop taking it I get a reaction.   Has anyone missed a dose and noticed withdrawal- like symptoms?

Mamie2

Hi ladies. I was wondering if anyone is experiencing any teeth pain; jaw pain on this? I just started about two weeks ago. My doc wants me to go see a dentist and says this should not be a se of Arimidex.

bobcat

Mamie - OMG - I can't beleive you posted this SE.  I have had teeth/jaw pain for weeks!!!  Thought it was my imagintion.  Wakes me up nightly and always there even though I've been diligent about oral care and just had my teeth cleaned and xrayed right after chemo ended.  But it started just about 2 weeks after starting Arimidex.  I see my Onc in 2 weeks and will pursue - you know this drug has  not been around long enough to know all the SE's.  Ladies, let's keep communicating.... love you all.

meadows4

I also had jaw/teeth pain after about 5 months taking arimidex.

I have stopped taking armidex and the pain is gone.

bobcat

Just spoke with my onc and he says that the teeth/jaw pain is rare but is definitely an arimidex se.  He also said most se's start to diminish within 3 - 6 months.  We'll see.  In the meantime I am going back to my dentist on Monday and regular MD on Tuesday.  Gage - how do you feel about stopping the arimidex?

my3girls

I am curious about those of you that have decided not to continue with the Arimidex. What did your OC's say? Did they put you on anything else. I am really tired of feeling old and the weight not being able to come off. I am not over weight, and I don't have my ovaries..I eat healthy, don't smoke and exercise. I see my doc in a few weeks and I am talking to her. I want off this med. I have been on it now for 8 months...and I still hurt daily..feet hurt, tired or can't sleep..can't lose weight, etc.

I was on tamoxifin for a year before I had my hysterectomy last summer. That tx did not bother me nearly as much as this one.

I'ts a hard decision to go off of the AI...but I am defintately heading down that road.

Sick and tired!

Lisa

nurlaw

Hello All: Glad to find this board. Have been going through hormone roller coaster for months now. After surgery and chemo etc,started Arimidex April 1st. I had horrible side effects within 3 days. Severe episodes of depression. Triggered by innocent comments by family or friends- resulting in sobbing crying jags for hours. Had three of those in first month.Headaches, sleep issues and horrible hot flashes too.

Saw med onc for 6 week post chemo checkup. He expected me to be happy and well because my chemo was over. When I told him how miserable I was on the Arimidex he suggested that I should switch to Tamoxifen.I did so, but was only on it for about 10 days before I had to stop for duration of radiation.

Studies done on differences in recurrence between Tamoxifen and Arimidex showed no statistical difference in recurrence rates between the two.My doc agrees.So I'm going with Tamoxifen. I had hot flashes on it, but no depression. Extending life on Arimidex is no life.

Have a good weekend!